PWSA Blog

Josephine’s Story

As told by her mom, Jennifer

The birth of our first child, Josephine and the weeks that followed in the NICU often brought to mind the term “brutiful.” We were so immediately deeply in love with Josephine and quickly so scared as well. Those days were so hard, but also full of beauty when we could see it. We had loving and supportive families, but just a couple of friends who had been through what we were going through with using a feeding tube and looking for a diagnosis.

When we found PWSA | USA, the “brutiful” slowly turned into beautiful. The darkness of grief and uncertainty gave way to the light of hope and the conviction that everything would be ok, just different than we had thought it would be. Our parent mentor was our life raft in the rough waters of the early days, keeping us afloat with great resources, depths of compassion and living proof that life would be good.

The Facebook groups that PWSA | USA hosts connected us to other families who were walking the same path, and allowed us all to share our fears, our triumphs and our knowledge. We were not alone anymore. This effect was only magnified by the PWSA | USA conferences where we not only gain incredible knowledge during sessions and individualized guidance from the global assessments, but incredible, deep friendships with families that I feel will forever be in our lives. We’ve also accessed family support services for invaluable resources as we developed our daughter’s IEP and provided information to her educational and therapeutic staff about PWS.

I’m so proud of PWSA | USA’s advocacy efforts to bring visibility and awareness about PWS to decision-making bodies in our government and the FDA. It is because of PWSA | USA that we thrive as a family.

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